A Young Survivor’s Journey Back to Say Thank You and Forever Grateful
Episode Summary
Some stories begin in fear and end in gratitude so profound it defies easy description. This is one of those stories. In March 2015, James Burton and his wife were living what seemed like an ordinary life in Devon, in the southwest of England, when they noticed something troubling about their 12-month-old son, Leo: his stomach appeared slightly distended. What followed was a journey no parent could ever prepare for, a diagnosis of rhabdomyosarcoma of the bladder, an emergency transfer by ambulance to Bristol Children’s Hospital, and a cascade of devastating conversations about their baby boy’s future. Ten years later, James sat across from host David Raubach at the Oklahoma Proton Center with that same son, now a bright, curious, cricket-playing 10-year-old named Leo, and told the story of how they got there.
The standard of care in the United Kingdom at the time for Leo’s tumor type and location would have meant surgical removal of his bladder at 12 months old. The lifelong implications of that for a child who had not yet begun to grow were staggering. But Leo’s oncologist in the UK, Dr. Merle, knew of another path: proton therapy, and specifically the Oklahoma Proton Center, which had built deep expertise in treating pediatric cases like Leo’s. Because the United Kingdom did not yet have a proton center of its own, the National Health Service was funding families to travel to the United States for treatment, and at Oklahoma Proton, approximately 50 children a year were arriving from the UK alone. The Burtons, without resources or connections in America, without ever having set foot in Oklahoma, made the decision that Leo’s grandfather put simply: you have to give him every chance.
What the Burton family found when they landed in Oklahoma surprised them. They had steeled themselves for the clinical and the unfamiliar, but what met them was warmth. The staff at the Oklahoma Proton Center, clinicians and administrators alike, cared for Leo as if he were family. And the center itself had become a kind of temporary community for families from around the world who were all carrying the same impossible weight. The friendships James and his family formed with other families during that treatment period have, he says, lasted to this day. Chemotherapy had already shrunk Leo’s tumor significantly before proton therapy began; proton therapy allowed the team to target what remained with extraordinary precision, preserving the bladder entirely. Leo grew up with no surgical aftermath, no profound quality-of-life compromise. He grew up simply as a child.
For Leo, now weeks away from his 11th birthday, visiting Oklahoma City this week was something he described as “quite overwhelming.” He has heard the story of his treatment many times over the course of his life, but standing inside the building where it happened, meeting the doctors and therapists who treated him as an infant, who remembered him and had photographs of him as a baby, made it real in a way it had never been before. He already knows what he wants to do with his life: become a doctor. James closed the conversation with a message aimed directly at every family facing a diagnosis right now: do your research, ask every question, seek the best possible care wherever it lives, and trust the people caring for your child. The Oklahoma Proton Center gave Leo everything. The Burtons will be forever grateful.
What You’ll Learn in This Episode
- Diagnosis at 12 Months: Leo was diagnosed with rhabdomyosarcoma of the bladder in March 2015 at just one year old, after his parents noticed a slightly distended abdomen. The family is from Devon in the southwest of England.
- Rhabdomyosarcoma of the Bladder: A rare and aggressive soft-tissue sarcoma that, in Leo’s location and age group, would have historically required surgical removal of the bladder, a decision with profound lifelong consequences for a child who had barely begun to develop.
- The UK Had No Proton Centers: In 2015, the United Kingdom did not have a proton therapy center. As a result, the NHS was funding families to travel abroad for treatment, and the Oklahoma Proton Center was treating roughly 50 pediatric patients per year from the UK alone.
- Chemotherapy First: Before proton therapy, Leo underwent chemotherapy in the UK, which proved highly effective, significantly shrinking the tumor and setting the stage for the targeted radiation treatment that would follow in Oklahoma.
- The Decision to Travel: Facing the prospect of uprooting their young family and flying 5,000 miles to a city they had never visited, the Burtons were ultimately anchored by Leo’s grandfather, who said plainly: you have to give him every chance.
- Bladder Preservation: Proton therapy’s precision allowed Leo’s treatment team to target his tumor while sparing his bladder entirely. He has grown up with completely normal physical development; the outcome that surgery could not have offered.
- A Community of Families: The Oklahoma Proton Center became a gathering point for families from the UK and around the world, all navigating pediatric cancer simultaneously. The bonds formed during those shared months of treatment have endured for a decade.
- Staff Who Remembered: During his return visit, Leo met doctors and therapists who not only remembered treating him as an infant but had photographs of him as a baby, a testament to the depth of connection the center’s team forms with every patient.
- Ten Years of Normal: Leo plays cricket, performs in school plays, and is described by his father as healthy, vibrant, and full of life; the full childhood that bladder preservation made possible.
- A Future in Medicine: Unprompted, Leo told David Raubach that he wants to become a doctor when he grows up. He finds medicine genuinely interesting, and he certainly has a unique medical history to draw upon.
- A Message for Other Families: James Burton’s advice to parents facing a pediatric cancer diagnosis today: don’t give up, do your research, seek out the best possible care regardless of where it is, and trust the specialists who are caring for your child.
Leo Burton came to Oklahoma as a baby who could not yet speak, could not yet walk steadily, and had no way of knowing what was being done to save his life. He returned at 10 years old, nearly 11, with a full decade of living behind him and a future he is already planning. His father James made an impossible decision in an impossible moment and chose hope. The Oklahoma Proton Center met that hope with expertise, with warmth, and with a level of care that the Burton family has spent ten years finding words for. What they came back to say, after all of it, is simply this: thank you. And that, David Raubach reflected, is what this work is for.
Full Transcript
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Transcript generated from the episode’s audio. Speaker names are identified from the context of the conversation rather than from recorded speaker data, and automatic transcription may misspell names and terminology. Please refer to the video for the authoritative version.
David Raubach: Hi, my name is David Raubach and I want to thank you for joining the Cancer Project podcast today. We’re really privileged to be able to talk to Leo who is a 10-year-old boy and a cancer survivor. He was treated for bladder cancer when he was about one years old. And then we have his dad, James, here. And it’s really an incredible story. At that point in time, 10 years ago, the United Kingdom didn’t have a proton center. And so there were many kids who were diagnosed with cancer in England or Wales or Scotland who actually came to the United States for treatment. And at the Oklahoma Proton Center, we were treating about 50 kids a year from that part of the world for a variety of different tumors.
David Raubach: And so it’s really neat for us to see a success story and have Leo and his father James here. And so we’re really excited to talk to them today about that experience 10 years ago, but also a little bit about what it means to be back here visiting the Proton Center and visiting Oklahoma City. So James and Leo, thank you guys so much for joining us today. So Leo, tell me remind me again, you’re 10 and you said you’ve got a birthday coming up here in a couple months.
Leo: Yeah. September.
David Raubach: When is it?
Leo: September the 10th.
David Raubach: September the 10th. Okay. So, I’m September the 4th, so maybe we’ll celebrate together. So tell me a little bit about where you’re at in life right now. What do you like to do?
Leo: Oh, so because it’s the summer, we in England, we like to play cricket a lot.
David Raubach: Okay.
Leo: I’m like a nerd in cricket. I like I like play it literally nearly every day, but because we’re in America, there’s not really that much cricket going on. It’s not really baseball because it’s summer. So, I’m not really playing that much in America right now, but when I get home, I’ll be playing it a lot.
David Raubach: So with cricket, and I’m not as familiar with cricket. I played a little bit as a kid, I had a friend whose dad grew up in India and so when I was a kid, his dad would organize neighborhood cricket games for us, but I don’t think that I know all the rules. So, tell me a little bit about what you like most about cricket. What position do you like to play or what part of cricket do you enjoy?
Leo: Well, I’m like an I’m an all rounding batter. So, I bowl and bat, but I think that I’m a bit only like a tiny bit better at batting, but because I open the batting, so I don’t really get to bowl that much. But when I bowl, I get I’m like average a wicket a game. But when I bat, I average quite a few runs.
David Raubach: Do you? Okay. So, what’s the most runs that you’ve scored in an at bat?
Leo: Oh, so because I’m only an under 11. Well, I play year up in cricket, so I’m in under 11s. You retire on 30 and I got 30 before.
David Raubach: You’ve gotten to 30. Okay. Wow, that’s amazing. That’s a lot of running.
Leo: Yeah. And hitting.
David Raubach: Yeah. And then do you like playing in the field?
Leo: Yeah. I Well, if you mean like playing in the field like trying to stop them for getting runs, so you have to like c if you catch the ball, they’re out. So yeah.
David Raubach: Okay. Yeah. But you’re more of a hitter.
Leo: I’m more of like a Well, if I’m fielding, I like I’m good at fielding, but I like I prefer batting and bowling.
David Raubach: Yeah, that’s fantastic. Well, that’s super fun. Well, I hope that you have a long and very successful cricket career. So, do you have do you root for England?
Leo: Yeah.
David Raubach: Then when they play international matches?
Leo: Yeah.
David Raubach: Have you gone to an international match?
Leo: No. But well, I’ve been to a women’s game, England versus Pakistan, but it only went it got called off for rain because I I it was 5 hours long cuz the rain stopped to play.
David Raubach: Okay. Well, that’s super fun. And so so when you’re not doing cricket, you’re probably in school right now, too. So, what what’s your favorite subject in school?
Leo: Oh, well, art is one of them.
David Raubach: Okay.
Leo: Sport, drama, and music.
David Raubach: Okay. Well, that’s great. So, you’re an artist. So, so you’ve got the musical side, the artistic side, the athletic side.
Leo: Yeah.
David Raubach: A man of many talents.
Leo: Yeah.
David Raubach: That’s fantastic. So and I know that you don’t necessarily remember a lot of the specifics about the treatment that you went through.
Leo: No.
David Raubach: But is this the first time that you’ve been back in the United States since treatment 10 years ago?
Leo: Yeah.
David Raubach: Okay. And so I’m going to turn to your dad here a little bit just to kind of introduce what you went through a few years back and then we can talk a little bit about what you saw today at the Proton Center. So, James tell us a little bit about the what ended up leading to you needing to come to Oklahoma City for treatment.
James: So, it was the January of 2015. It was going to we were going to take Leo swimming for the first time. So we went to put him in a a swimming nappy and within the his overnight nappy there was a little blood clot. Looked a bit like a bogey but it was red. So we took him to the local MU and they thought it might be an infection which is very rare in a young boy of that sort of age. And they gave him some antibiotics that ruined him really. So after a few weeks we kept pressing and the doctor was good. He’s saying this is not right. We need to escalate this. And actually it’s you know it’s fairly traumatic sort of time. I was away working and I got a phone call on the trip back.
James: I was working with the ladies rugby team and and there was a doctor saying look we’ve scanned him. There’s something that we’re unsure about and you need to go up to the local children’s specialist hospital in Bristol. And we went the next day. And then some pretty dark days and places where no parent should really go came around. And Leo was had a an operation to just look inside the bladder and then they gave us the news. Going on from there, it was all pretty quick. They were saying they came up with a protocol for him which included chemotherapy. Should that not work then it was escalated to surgery. And because of his age and the ability for his liver and kidneys to sort of get rid of toxins, which fundamentally chemo is, they couldn’t overdose him and probably underdosed him.
James: Sort of speculation really, but it didn’t really have a great impact on his cancer. So they said, “Right, we’re going to have to remove the bladder.” So again, next escalated in regards to stress and everything. And there were tough times. He was in intensive care for a lot of that period and it was up and down and we were having phone calls to come in and all sorts of stuff. And then they started talking about a treatment called proton beam therapy in America. And initially they came up with two potential places. One being Jacksonville, Florida. One being Oklahoma. Now, we don’t know much about Oklahoma. Back home in Jacksonville, obviously Florida, Disney World, we were thinking, “Please, please be there.”
David Raubach: Yeah.
James: They said, “No, it’s Oklahoma.” And we’re going, “Really?” You know, what more can we be taking here? But we were so wrong. It was just great to come out here. So we flew out here on the 3rd of July that year. Went to our first independence day on the 4th. And then the journey started with the ProCure Center and at the children’s hospital for sessions of chemo alongside which was slightly more smooth than home. They because of the proton they couldn’t use a certain chemotherapy that made him very sick. So, you know, it’s a smoother process but tended to make him require more blood transfusions. So, Abby and myself were in and out of hospital without that. But throughout that but we had great support. We had grandparents, two of her here today for the first month just looking after us.
James: Looking after Hattie as well because little Hattie was, you know, three and a half. We were at ProCure every day or down at the hospital. So it was it could have been difficult but we were had such a great support network throughout the process and obviously ProCure was just an amazing sanctuary to go to which gave 10 other families that were with us at the time from the UK all with children being treated for cancer. Schedules of events to go and do meals out. It was well it started pretty dark and ended up a lot of light and confidence and hope going forward.
David Raubach: So I want to step back a little bit and that’s just an unbelievable story and like you said something that no parent or family should ever have to go through. So you talked about that first moment where there was the blood clot I think is the way you described it. How old was he at that point?
James: Must be four months.
David Raubach: Four months old. And so then from that point, how long was it until you knew what the diagnosis was?
James: Quick. Within two weeks, I would have thought.
David Raubach: Okay. So very very quickly after maybe even quick.
James: Well, no, the first couple of weeks were they were trying things, normal things like antibiotics for potential infection, but they didn’t hang around. When that wasn’t working we went into the local bigger hospital and we had a brilliant urologist doctor there, Hannah Cotus. And she scanned him, went me something’s wrong.
David Raubach: Yeah.
James: And then, you know, within a day we’re up at this children’s specialist hospital in a bigger city up the road about 100 miles up the road and then it just quick, super quick.
David Raubach: What was the so at that point and I know this was 10 years ago but I imagine to a certain extent there’s days where you wake up and relive that moment or it can still be vivid at times. What were you thinking or what was the family thinking? Was it surprise, shock, fear, determination, all of the above? What was going through your head those first couple weeks as you were trying to figure out what was going on with Leo and then at that moment that you got told that there was a cancer diagnosis.
James: Yeah, it was horror as much as anything. You know, we he had his cystoscopy and the doctor came back. I can remember this very well. It’s, you know, it’s just there. And he said, you know, it’s cancer and sort of, yeah, the noises that came out of Abby were just incredible. And but we have a an incredible family support system. And within that sort of five, 10 minutes of us just going, “This can’t be happening.” We’re on the phone. Keith and Janet who were here today came straight up. Her mom and stepdad flew straight. They were out in Kuala Lumpur just on a stopover in Kuala Lumpur. Turned around, got on the plane, came straight back. Their brothers and sisters, everyone just rallied around to give us support. Yeah, it’s a sort of place that you wouldn’t wish on anyone.
James: It’s, you know, cancer in children is a not a great place to be. And we’re on the seventh floor, which is the children’s cancer floor at the Bristol children’s hospital. And there was varying amounts of all distress.
David Raubach: Mhm.
James: And you’re looking at other people thinking, “Oh my goodness, this is sort of worse for them than it is for us.” And for us, it’s sort of horrific.
David Raubach: Mhm.
James: And on that 4th of February, the you know the World Cancer Day yeah, when they hooked him up for chemo for the first time, it was without a shadow of a doubt the worst time of my life.
David Raubach: I think I’ve heard parents of some of the other pediatric patients that we’ve treated talk about the fact that they wish it was happening to them. They see it happening to their child and they say, “I would give anything to not have this be happening to my child, but let me take this on.”
James: For sure. No, absolutely. You would swap in a heartbeat.
David Raubach: Yeah. What and so talk to me a little bit more about the the treatment before you got to the United States. So you did have to do a surgery. So did you start with chemotherapy and then there was a surgery?
James: Yeah, I started with chemo. They did a cycle and then rescanned just to see whether they could control the spread of the cancer within the bladder. And they couldn’t they said it’s still growing and because of his age they couldn’t give him more of a dose. It will probably kill him. So they said we got to take the bladder out. Which is a obviously a huge operation and and has sort of long-lasting effects on other systems and but we had there’s no choice. So he went through a huge operation. I think Keith and Janet are here today. We were up in Bristol. We all went out while he was having surgery. We just told to just to get away. And then he was in intensive care for for some time. And there were various times when other systems were under a lot more stress.
James: So it was it’s pretty tricky but that all settled down and chemo resumed and was doing its job. And then they talked about the margins. So within the surrounding tissues to the bladder, there was a theoretical potential that it may have spread. As with like the chemo, it’s it’s sort of a theoretical it may be in the bloodstream. We have to poison your child, right? But you do it. You don’t ask why and whatever. You just get on with it even though you know it’s not great. So when they talked about the margins, they talked about radiotherapy. They said the best place to go would be to the states with for proton beam therapy. And at the time and this is obviously different today, but that at the time there was not a proton center in the United Kingdom.
David Raubach: And so for patients like Leo that needed proton therapy or would benefit from proton therapy, you had to leave the country. What and so you talked about that mindset of we need to do whatever it takes. There was never a question of should we leave the country to go get treatment.
James: No. So the NHS, you know, it has its faults, but for kiddies medicine, it’s second to none. You know, it’s a it is free at the point of requirement and you know, we pay our taxes, but you know, it’s a hugely different system to the one in the States and they would pay for Leo’s treatment and one parent to go with him out to the States. So we raised money. You know, I was off work at that point. So we had all those other stresses of how do we pay the mortgage? How do we do this, that, and the other? So we raised the local community was fabulous and raised enough. So we well more than enough. So, we all flew out together alongside Keith and Janet who are really our logistical support and fabulous and I had time off work. Abby was off work.
James: Hattie was three and a half years old. We couldn’t, you know, we all wanted to be together. When we got to the States, the option was to stay in one of the hotels near the ProCure Center. We didn’t think that really suited all of us in one room, right? So, we upgraded and went to a local neighborhood. And the ProCure Center found us a lovely house in a superb little environment with a neighborhood pool. And we rocked up at the pool and obviously with our accents it would people were looking and it was Brits are quite skeptical about people being nice to them.
David Raubach: Mhm.
James: And at first it was just really hard to sort of process. But everyone has a story and know someone who’s had cancer or know a child who’s had cancer and the people just took us on board. They supported us. They would feed us. They would drop beer at the door. It was just fabulous. Fabulous time. In in regards to support. And then Abby and myself would go to the ProCure Center every morning with Leo and and Keith and Janet would look after Hattie and we plan nice things to do when Leo was well enough to do it.
David Raubach: Mhm. What was the So that that’s a great way I think that’s a great way to describe the culture and the environment in Oklahoma and especially the community that’s kind of affiliated with or associated with the Proton Center. We really do try to become a big family and support each other especially as we had so many families. I mean, you talked about the fact that there were at the time there were 10 other families from England that were over in Oklahoma City getting treatment. Tell me a little bit about that first day that you walked into the Proton Center and it’s a new facility, you’re in a new country, you’re meeting a bunch of new people. What was going through your head and what were some of the things that you remember from those first couple days coming into the center?
James: Well, the first thing and we still laugh about it now and we checked it out straight away was the the sign saying no smoking and no guns. So obviously for very Oklahoma.
David Raubach: Wow. That’s that’s we have to remind people leave your guns in the car. You know, you can’t bring them in.
James: Yeah. And then as soon as you walk through that door, it’s sort of this sanctuary of smiling people and kindness and support and hope. And then the system back then slightly different from now because there was many children there. But Leo would always be first of the day because he was the youngest and he had to be have sedated for his scans and treatment. They would buddy them up with someone older generally male who was in there for prostate treatment. When we met this his buddy was this lovely chap called Ron and we’re meeting him in a few days.
David Raubach: That’s fantastic.
James: Yeah, which is great. And then Leo’s We’ll be there for about an hour. His treatment would be about 10 minutes to be able to come back around and we were looked after. So, you start the day in a good way. He smiled at everyone. We take him through, leave him with the staff, walk off poly in tears. He was having a good time. It appeared. So that became home from home and family as well. They were the staff were incredible and being at the graduation today. The sentiment hasn’t changed. Everyone still feels exactly the same. The staff are there and they they’re just incredibly look after you so well.
David Raubach: Yeah. And so that’s that’s a good segue. Maybe let’s talk a little bit about that. So part of the reason that you guys are back here today is so that Leo gets the opportunity to see where he was at for a period of time when he was younger and just this experience that he’s gone through, but also it’s an opportunity to reconnect with some of the clinicians or prostate cancer patient Ron who you’re going to meet. And I thought it was really neat when two of the therapists Shelley and Kim, came out to see you, Leo, and they talked about the fact that they used to fight over who got to carry you to the back because you were always smiling. And I think your dad just talked about that.
David Raubach: But they even 10 years later they remembered you and have that fond memory of even though it was a really difficult thing that you were going through, they grew to really love you as a baby and as a kid and we still see that smile today. So that’s great. So tell me a little bit for you Leo when you walked in the center today. I know you had just heard about it from a distance. What was it like for you walking into the Proton Center?
Leo: Well, it was sort of like heartwarming because I don’t know what it was. But then all the people that knew me that they that saw me when I walked in, they were so nice and I was like, “Who are you? Who are you? I don’t know you.” But it’s like, “Should I know them?” But I was just like I was like, “I don’t know.” It was just so nice to meet all the people that had treated me, but I didn’t know a clue who they were.
David Raubach: What that’s amazing. Thank you. Thank you for sharing that, Leo. So what were some of the other things that stood out because you got a tour of the facility and you got to see the machine shop and see the nurses area and see the treatment room and see the anesthesia or sedation area. What were some of the other things that stood out to you as you walked through the center?
Leo: Oh, so I think the big one for me is when I walked into the place where I have my when I had my treatment because it the machine was so big and I it’s just it’s bigger underground.
David Raubach: Is it like how?
Leo: It’s massive. And it’s just like it was just so big for me. And I thought it was just going to be a little machine that just does loads of stuff and just didn’t I didn’t even know it span me around.
David Raubach: That room that you’re in that you’re talking about, the gantry room. So you talked about it being underground. So what you see when you walk in the room?
Leo: Yeah.
David Raubach: That’s just one-third of the size of that machine. So it goes up one story above the room and it goes down an entire story below the room. And that whole contraption, that whole gantry device weighs over a hundred tons. And you talked about spinning it around you. We can actually rotate all of that weight around you. And you saw the did you see the table, the treatment table where you would have been during treatment?
Leo: Yeah.
David Raubach: And so and then you got to stay for the graduation
Leo: Yeah.
David Raubach: Lunch. So tell me a little bit about that because when you finished treatment 10 years ago, we would have had a similar graduation celebration acknowledging and celebrating with the patients that were finishing treatment at that point in time.
Leo: Yeah.
David Raubach: What was it like for you seeing a graduation lunch today?
Leo: It was really nice because those people would be going through they would have been going through a lot and just to know what it feels like. Well, I know what it feels like but I just can’t remember what it feels like.
David Raubach: Mh.
Leo: But to know what it feels like or just to see what it feels like to finish your treatment, it’s just really nice because they just it’s really quite rare to have cancer. And if you get it, it’s quite sad on your family because there’s a chance you can die. And for me, cuz I was a baby, I could have died when I was not even a year old. So, I just I think it’s just really nice to see them and that that’s amazing.
David Raubach: Leo, so I think for you being there, you know, these are patients that are just finishing treatment and you’ve been out for 10 years now. I think it was really encouraging for the patients that are just finishing up treatment to see you doing so well 10 years post treatment because they’re thinking what is my life going to be like a year from now or two years from now or five years from now or certainly 10 years from now. And so I think you talked about it was neat for you to walk in and see where you got treated. I think it was really again to use the word encouraging for them to see somebody who was so far out from treatment and doing well. So it was we’re grateful that you came in to encourage them.
David Raubach: What what are some of the other things that you’ll take away from today just being at the center? What’s maybe something else that you remember that stood out?
Leo: All the people were just so nice there. And they’re just like when I was for lunch, all the helpers were just so nice as well. And just all the people there are just they’re just brilliant and they’re just really nice.
David Raubach: We we have a fantastic team at the Proton Center here in Oklahoma City. We’re really fortunate. And one of the things that we talk about is we smile a lot at the facility. And we smile not because we don’t understand the gravity and the seriousness of what we’re doing. We smile because we understand that. And the last thing that we need to do is bring more stress and more burden and more fear into the environment. So we’d rather take a different approach and say, you know what, this is a really really difficult thing that all of these patients are having to go through and their families are having to go through. We’re going to make the best of it while we’re here. And I and again, I go back to what the two therapists said. You brought that smile in as a kid.
David Raubach: And that’s I think that’s what’s so in part of what’s so inspiring for us working in oncology is seeing kids come in and they’re going through something so difficult and so challenging and they just keep on trucking. They just keep on moving and they don’t let it phase them. And you really did that even as a 10-month-old. What? So James, talk a little bit about what your communication has been with Leo because obviously he doesn’t remember going through treatment. When did you talk to him for the first time about the fact that he had gone through cancer treatment as a baby or how did you approach having those conversations with him?
James: I think it was a gradual process over several years. Because Leo knew nothing else but having his urostomy bag. But knew it wasn’t the same as everyone but in those early years just was fairly oblivious to the gravity of of why he had had it. And then I suppose over the years we’ve prior to school he didn’t we started to introduce the idea that he had cancer and we showed him lots of pictures of people and this is what you’ve been through and it’s a very rare thing and you’re doing so well. And then he’d still have his scans at the hospitals to just a yearly well started off at six monthly scans and then up to yearly scans.
James: Then you get to that five years where they sort of discharge him and the parents will go into meltdown because he’s not getting regular sort of screening because statistically he’s doing really well and he doesn’t need it. So over those sort of periods then Leo would start to be a little bit more inquisitive and and say my you know when am I going to have my bag removed and and things like that and then he’d go to school and then obviously other children would ask him questions. So over the sort of five years he’s been at school that sort of ramped up. Leo’s turning into a young man. He’s asking more and more questions and you know Leo had a classmate who also had cancer and so we did speak a lot more about it and Leo was a huge support and we would hopefully support for Charlie’s lovely parents.
James: And so it’s just been a natural progression of really having to drip feed information. You know, he’s he’s 10. He’s got lots of growing to do. We have a fabulous urologist back home at the children’s hospital. He doesn’t want to do anything until he’s older, but he keeps him up to date with where he is at the moment and how well it works and Leo manages so well. He embraces the fact that he’s had it. He would show people his bag. He would just you know tell his peers about you know the sort of changes or the differences that he has but equally he does everything that they do in regards to sports education you know he gets on the stage he sings he acts he’s is amazing he’s amazing child he’s great at sports like his sister and
David Raubach: Yeah, pleasure.
James: He’s a real pleasure to have as a son.
David Raubach: Well, and he’s a great storyteller, too. You’ve done a fantastic job today, Leo. This is this the first time that you’ve been on a podcast?
Leo: Yeah.
David Raubach: Is it?
Leo: Yeah.
David Raubach: You’re a natural. This I could see a career for you in this. It sounds like you have many talents, though. So, what what are it’s I like what your dad said about the fact that you aren’t afraid to just embrace the experience that you’ve gone through. You’re willing to talk about it, but it sounds like you’re also using it as a tool or a mechanism to encourage other kids, whether you talked about there’s a classmate that has gone is going through cancer, went through cancer and maybe it’s not cancer, maybe it’s something else. So, tell me a little bit about your mindset about how you’re using what you’ve gone through to help other people.
Leo: Oh, well if like older people than me, like my friend’s mom had cancer, breast cancer, I don’t know.
David Raubach: Is she still going through it?
Leo: Sarah, she’s I think she’s clear now.
David Raubach: She’s clear.
Leo: But and because I finished it when I was really young and to have it so young is quite just and it it’s just inspiring for people and people just think that I’m a real inspirement and people for me they also like my the son and the two daughters of my friend’s mom they ran run a race. No, well, they run a run for all the people who have had cancer. And it’s just I just think it’s really I think I inspire people and I think also other people inspire me.
David Raubach: You do inspire people, Leo, and I saw that today at the luncheon and I do genuinely mean that you it was an encouragement for you to be there and don’t ever stop doing that. What? So just to wrap up a little bit and then we are gonna get the privilege to talk to your sister and mom and grandparents as well. So you’re here in Oklahoma for a couple of weeks. What are some other things that you’re looking forward to doing while you’re here in town?
Leo: Oh, so Frontier City.
David Raubach: Okay.
Leo: Go to the zoo. Heard there’s a baby elephant there. Top Golf restaurants. We’ve been to Whataburger.
David Raubach: Okay.
Leo: Me and Hattie are off are ragging Raising Canes. I don’t know why. We’ve just heard of it. We are having a street party.
David Raubach: Okay.
Leo: With our some friends that we made back 10 years ago. Had my sisters going to the lower forces and just stuff like just loads of other stuff that there’s just so much to do and we’ve only got two weeks here so I don’t know how we’re going to fit everything in but I think we will.
David Raubach: If you do all that, that’s an amazing two week. If you hit Raising Canes, Whataburger, the zoo, a street party, museums, Frontier City, that that’s an amazing that’s a perfect two weeks in Oklahoma City. That’s great. Well, I just want to thank you guys so much for taking the time to talk to us while you guys are in town. It’s great to see you, Leo. It’s great to see you doing so well. And James, thank you for being so transparent and being willing to share. And especially being willing to share in such a vulnerable way that I know will be an encouragement to other people that that hear this that maybe are just starting along that journey, having a family member or a kid going through cancer treatment. So, thank you guys so much.
James: Pleasure.
Leo: Pleasure.
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